Neuro/2 Month Post-Op Update

Hi Everyone!

I wanted to do an update, as I was just at the neurologist yesterday AND because we are nearing the 2 month post-op milestone. I thought about waiting until Monday (the actual 2 month mark), but we are moving out on Sunday and I didn’t think I would have much time then. So to get right into it…

I was really hoping that I would be able to decrease some of my medications following this neurology visit, but I’m actually leaving with two new prescriptions. I was very disappointed about this at first, but I understand the reasoning. Since having Serotonin Syndrome, I’ve been having some other health problems. Scary health problems, but health problems that were kind of overshadowed by the whole brain surgery thing. Serotonin Syndrome made it so that my body couldn’t regulate itself. I talked about this in more detail in the blog post “Some Quick, Unedited Feelings”. Unfortunately, my body is still having a hard time regulating certain functions – mainly, my blood pressure and heart rate. My blood pressure skyrockets and my heart rate quickens and becomes irregular for no apparent reason. These problems cause me to get randomly faint and dizzy and can even cause my vision to blur and double. It’s strange and terrifying to be lying completely still and then feel like you’re having a heart attack. The other problem I’ve been experiencing started to occur after surgery. Severe, chronic migraines. Now, I’ve dealt with chronic migraines since I was 13, but this is a whole new level. I’m having migraines 3-5 times per week and I recently had one that lasted 12 days straight. Although they’re not as painful as TN, they can become pretty debilitating. When I asked my neurologist about this, she said “they just cracked open your nut and irritated the nerve responsible for migraines. There’s no doubt in my mind that they’re a result of the surgery.” She also told me not to be scared, though. As my nerve settles down, so should the migraines. It just sucks to be experiencing all of these other issues when my TN pain is finally tolerable!

You may be asking, “if the TN pain is better, why aren’t they decreasing some of your medications?” I had a similar thought process and I was pretty devastated when the neurologist said that it would be at least 6 months, preferably a year, before I could begin to decrease. I was promptly reminded that I just had major surgery 7 weeks ago and that my body is not stabilized yet. After over 6 years of medications, deconditioning, and degradation, my body is not just going to snap back in a matter of weeks. As much as I really freaking want it to. She also asked me to recall how all my previous med titrations have gone. Every time I’ve ever tried to decrease my medications, I have had lots of problems. Furthermore, even though my pain is stable right now, there’s a chance that it could shoot back up if we try to decrease too quickly. It’s very important that we don’t jeopardize the results of surgery by moving too fast. Unfortunately, staying on the medications means that my memory, concentration, and motor control will continue to be compromised. This ultimately means that going back to school, working, and driving long distances will have to stay on hold for a little while longer. As disappointing as this is, I’ve been dealing with this for 6 years, so I know I can hold out a bit longer. Especially if it means that my outcomes will be better in the long run.

I know some of my fellow TN warriors are curious about the medications and vitamins that I currently take. So, as of right now:

Daily

• Trileptal (Oxcarbazepine) 1500mg
• Baclofen 40mg
• Pantoprazole 40mg

As Needed

• Toradol IM 10mg
• Lorazepam SL 1mg
• Zofran (Ondansetron) 8mg
• Gravol 50mg

Vitamins

• Centrum Women’s Multigummies
• Iron 35mg
• Calcium 600mg
• D3 400 IU
• Folic Acid 1mg

Now, I know that I don’t owe anyone an explanation, but I’m going to provide one anyways because some people out there are stupid and judgemental. These medications, while they have side effects, have allowed me to have a quality of life. That is something I would not have if I did not treat my very debilitating illness. I would not have been prescribed these medications if I did not need them. They can be effective in treating this disease and there is no Big Pharma conspiracy about that. As for the amount of vitamins I take, my medications unfortunately inhibit my body’s ability to absorb vitamins properly. On top of that, when my pain was very severe before surgery, I couldn’t eat properly and was not getting the nutrients I needed from my diet. Whether you agree with medications or not, that is how I, and many other people choose to treat this disease and it is not your business to tell me whether you think that’s right or wrong. Rant over.

Moving on to the new medications, I have been prescribed Cambia (Diclofenac) 50mg and Propanalol 40mg. Cambia is an NSAID (anti-inflammatory) and will be used as an as-needed migraine intervention med. It comes in powder form, which is really nice for those of us that don’t want to swallow more pills then we already do. The reason I have been prescribed Cambia instead of the typical triptan migraine meds is because triptans increase your Serotonin levels. The last thing we need is to have a repeat of the Serotonin Syndrome experience! Propanalol is the one I’m very eager to try. It is a beta-blocker and was originally used to treat high blood pressure. Like a lot of medications, it’s been found to have more than one use, though. Neurologists have started using it as a preventative migraine medication. The reason I’m so eager to try Propanalol is because, not only will it help with migraine prevention, but it will also help regulate my blood pressure and heart rate. It could help us kill THREE birds with one stone. I’m trying not to get my hopes up, but this medication could be the answer to a lot of the issues I’m experiencing and could definitely change my life. On top of the two prescribed medications, my neurologist has suggested that I start taking Magnesium and B2 for added migraine prevention.

As I mentioned in my previous blog post, I’m not 100% TN free. However, it is a hell of a lot better then before. The frequency, duration, and intensity of my attacks have decreased dramatically and I’m not using as much as-needed medication. I hope that this is a good indication of what the future has to hold! When I do experience the pain, it’s usually when I’ve been active or when I’ve been absorbing too much stimuli. Howbeit, that usually means I’ve been having fun… and I’ve been having a lot of fun lately. My life has completely changed from 2 months ago. Even with all the setbacks, I’m getting out of the house and doing more. While I have to continue taking it easy for a bit, it’s important that I change my scenery and exercise lightly. My neurologist believes that this will improve my sleep, mental health, and physical health. The better my overall health, the closer I get to decreasing some of my medications!

As always, I’m so thankful and appreciative for those that are on this journey with us! I can’t wait to give you more and more good news.

Love, Mackenzie